Helping families find the critical information and support they need
December 11, 2019
Report from Rare Disease Week in D.C.
March 2, 2017
2019 - The Year in Review
December 31, 2019
A bright future -- The Joy of Learning
August 15, 2014
The roller coaster of emotions associated with the hundreds of visits with Elliott’s many doctors is indescribable. With so little known about Elliott’s underlying disease, tests and reports from doctors have so often been frustrating, confusing and without clear results. After time and again hearing “everything looks normal” yet knowing day in and day out that Elliott presents with such profound disabilities, we have insulated ourselves from disappointment by tempering our expectations.
We went to Pittsburgh to see a doctor about Elliott’s CVI, which stands for cortical visual impairment. This often occurs as a result of damage to the brain that leaves it unable to translate what the eyes are seeing. Going in, we were uncertain how much Elliott was really seeing because he didn't seem to focus on faces or objects that much. We also went with modest expectations and hoping that we just might gain some insight into what Elliott can and can’t see and what the prognosis might be. As Elliott slept through the first hour of the appointment while we filled Dr. Roman in on his extended medical history, we were even more convinced that the trip might be a bust. But after some light torture from Bubbie, Elliott awoke to meet (and squeal enthusiastically for) Dr. Roman, a recognized international expert on CVI. After going through a number of activities to assess Elliott, Dr. Roman, who created a method for analyzing, measuring, and improving functional vision, expressed unequivocal optimism for Elliott’s current ability to see and his potential to develop and improve his vision. We learned that kids with CVI often don't focus our look at things straight on but rather take sneaky peeks at things and use their peripheral vision to initiate looking. For once, we cried in joy at a doctor’s appointment as opposed to disappointment and frustration.
The joy was not just in discovering that Elliott can see but also in the excitement Elliott seemed to experience as he was presented with various visual opportunities sensitive to his current visual and physical skills. He was attentive. He was engaged. He was stimulated. He even seemed exhilarated.
The new horizon that had opened up was for Elliott to experience the joy of learning.
Most parents of young children take that for granted that their children will learn and experience life as fully engaged people. That’s what kids do – they learn and develop and grow right before your eyes. Every day. And often many times a day. They figure things out – understand them, and begin to develop a confidence in their own ability to affect and shape their world.
As we can help Elliott have more frequent opportunities to see and interact with things, he can start to experience the delight of learning and discovery. And with that comes the sense of self and the satisfaction with being able to make things happen. We heard his squeals of delight as he seemed to focus on the various objects - an iPad screen with an interactive program on it, a slinky lit up with a flash light - and gain confidence in and delight in his ability to brighten the screen with a touch or make the slinky move. With frequent and intensive therapy (which is really targeted playing), we are hopeful that Elliott can gain the ability to see, engage with the world around him and hopefully, to one day, recognize our faces.
Elliott seems ready for this exciting new challenge and we certainly are as well. Go Elliott!
A huge thanks to everyone who helped make this consult happen!